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Allas: Camilla, ill with ME, chose to end her life https://www.allas.se/me-sjuka-camilla-valde-att-avsluta-sitt-liv/ Hemmets: Camilla, ill with ME, chose to end her life https://www.hemmets.se/me-sjuka-camilla-valde-att-avsluta-sitt-liv/

Those of you who have been following the discussions on social media after the seminar, what's your impression? Do you think they "got it"? Do you think they now understand what PEM is, and that ME isn't "fatigue"?

"Jonas Blomberg: There is still no labtest that can easily detect ME/CFS." "The cardinal symptom is PEM" Slide says: "What is PEM? 'Postexertional malaise' = Exertion-triggered worsening of symptoms After moderate mental or physical exertion (cleaning etc) need for a long period of rest...

"Per Julin on basic facts about ME/CFS" "Where does the name come from?" "There are different diagnostic criteria that have been developed over time. The more recent ones focus on PEM, [exertion-triggered worsening]." "Now Jonas Blomberg on ME/CFS research." The title on the slide says...

"125 GPs registered for today's seminar, there is a large demand for knowledge!" "In 2003 the National Board of Health and Welfare published diagnostic criteria for [burnout, stress-related exhaustion syndrome] according to the DSM model." "Marie Åsberg talks about different kinds of...

"Interesting training today about [burnout, stress-related exhaustion syndrome] and myalgic encephalomyelitis (ME/CSF). If my own knowledge in this field is representative for doctors in general, I can conclude that it is very much inadequate."

Läkartidningen: För dålig kunskap om kroniskt trötthetssyndrom http://lakartidningen.se/Aktuellt/Nyheter/2018/05/For-dalig-kunskap-om-kroniskt-trotthetssyndrom/ Läkartidningen is a medical journal published by the Swedish Medical Association.

#MillionsMissing press release by RME (the Swedish ME Association), published today: http://www.mynewsdesk.com/se/pressreleases/me-sjuka-syns-med-hjaelp-av-sina-tomma-skor-2499800

Dagens Medicin: Kunskap om kronisk trötthet för låg https://www.dagensmedicin.se/artiklar/2018/05/07/kunskap-om-kronisk-trotthet-for-lag/

Ministry of Health and Social Affairs:

Thank you so much :) Much appreciated! :)

A good Twitter thread (in Swedish) that explains the potential problems:

SVT: Socialstyrelsen ska utreda sjukdomen ME https://www.svt.se/nyheter/inrikes/socialstyrelsen-ska-utreda-sjukdomen-me

https://www.svtplay.se/video/17753915/rapport/rapport-6-maj-18-00-2?start=auto (Available until 13 May.)

The draft report is only available in Finnish, unfortunately. It probably deserves its own thread, so I made one here: https://www.s4me.info/threads/finland-draft-report-on-planned-guidelines-based-on-finks-functional-disorders.3949/ @Esther12, I had accidentally linked to the wrong document --...

STM, the Ministry of Social Affairs and health in Finland, has published a draft report on the planned care plan/guidelines for our disease. Only available in Finnish, so far, I believe...

I don't have any solutions, I'm afraid :) But I believe a great point to start from would be to have laser-focus on the few things that we all agree on. I believe in repeating a few undeniable facts over and over, backed up by solid evidence (including anecdotal evidence such as, for example...

Ekuriren: Kunskap om kronisk trötthet för låg https://www.ekuriren.se/nyheter-fran-tt/kunskap-om-kronisk-trotthet-for-lag/ Google Translate, English ("Too little knowledge about chronic fatigue")...